[Beth Deering]
I want to be mindful of everyone’s time because we have a short window today. And it’s 11. Looks like we have more than half of our participants, our attendees on the call. So we’ll, we’ll do a slow a slow start to the introduction. Let people trickle in. I want to thank everybody for joining us today. I know this is an unusual circumstance, although I guess now it’s it’s a usual circle circumstance for meetings and webinars. So, but thank you, everyone for calling in. We’re really looking forward to a meaningful conversation today among our panelists. At the end, we will have some time for q&a. I do encourage you though, throughout the conversation, for those who are on in attendance to please submit your questions, and we will try to address them if not as they come up, definitely at the end when we have some time. I want to thank Disability Pride Philadelphia for hosting this event today as we celebrate 30 years of the Americans with Disabilities Act. And finally, I want to say that there is going to be a recording of this panel with a full transcript available on our website. So if anyone has any questions or concerns about how to access that, once it’s up, I will be happy to send that to you. I’m also going to be sending a follow up email after this conference, this webinar, just to check in send you some links that we’re going to mention today and some more information about the film and A closer look. So I’m happy to introduce our panelists today. And thank you again so much for being here. First, I want to start with Joseph Lovett, who is our fantastic filmmaker, and we’re so grateful is on this call with us today. So Joe is an award and I apologize I’m not good at pretending not to read off of paper as I’m reading. So Joe is an award winning filmmaker, whose films have informed, engaged and inspired people into action. In 2001, Joe won a Peabody Award, and received an Emmy nomination for writing, producing and directing HBO is cancer evolution to revolution in Joe’s film Going Blind, and its outreach campaign Going Blind and Going Forward. He’s ignited a global movement of individuals, grassroot organizations and medical professionals sponsoring screenings to raise awareness and to improve access to vision enhancement services. Some other broadcast films that Joe has directed and produced include The Way Home, State of Denial, and Too Hot Not to Handle. Joe has been honored with numerous awards from advocacy organizations, including the AIDS Leadership Award, the Christopher Award, and the Kitty Carlisle Hart Award. So we’re very excited to have you here today. And thank you so much for sharing your beautiful film and story with us. Also, on our panel, we have Dr. Ranjoo Prasad, you know, not only did I spell your name wrong, I stumbled on saying it – so thank you for thank you so much for being here today. So Dr. Prasad, is a low vision low vision optometrist who’s been in practice for 22 years and is presently the director of Penn Center of Low Vision, the Department of ophthalmology at Scheie Eye Institute in the University of Pennsylvania healthcare system. We’re very proud to have Dr. Prasad as a board member at the VisionLink. We’re very happy to be in partnership as we move forward with our programming. Thank you very much for being here today. And finally, we have Lynn Heitz, who is the Director of Education and Enrichment Programming at VisionLink. Previously, Lynn served as the District Administrator for the Philadelphia District Office of the Bureau of Blindness and Vision services. In 2017 Lynn was elected as president of the National Federation of the Blind for Pennsylvania. And the NFB is the largest consumer organization of blind individuals in the country. So we’re very thrilled to have everybody here today. Thank you so much for joining us. And I’d like to just start off by asking Joe, if you can tell us a little bit about your experience making this film and the impact that you felt it’s had over the past 10 years since it’s been made.
[Joseph Lovett]
Of course, um, by the way, if people want to go to our website, which is www.goingblindmovie.com. There is a short video there on that that’s sort of an update on Going Blind that that talks about how we’ve used it. And also what I’ve been through in the past 10 years since the film has finished and we’re, we’re hoping to do updates on every character in the film. Making the film was an extraordinary experience for me. Because as I say, in the film, I wasn’t getting the answers from my doctors that I needed. And, and people on the street, were extraordinarily generous to me. Jessica Jones in particular, who has become a lot, now a very close friend for 10 years. And you know, when you’re losing your vision, you know, most people who are visually impaired aren’t totally blind. They have some vision. But it’s confusing because you really don’t know what’s safe. What’s not safe? You’ve never really been down this road before as it were. And it’s, it’s hard to it’s hard to assess your situation in many times, should I be driving? Should I not be driving? should I? Should I be doing what I can? Should I not be – Am I overdoing it, that kind of thing. So talking to people who’ve been through the experience of vision loss was extraordinarily helpful to me. And I learned an enormous amount and quite frankly, as my vision has gotten worse, it’s still pretty good. I’ve gone totally blind in my left die from infection actually not from the glaucoma and I’ve lost a lot more efficient in my right eye but I still have a good chunk of 2020 vision, maybe about this much instead of a you know, knowing what could happen, and what very well might happen, for me was very helpful. Because when the when bad things happen, I could say, well, at least I don’t have a massive infection, and I haven’t lost the sight of my eye. And then when I, you know, 10 years later when that did happen, I could say to myself, well, at least I’ve had, you know, that vision for a very long time much longer than a lot of people thought I would. And, and I can deal with this. I think meeting the people in the film told me and I think it’s told other people who watch the film, you can deal with this. No, this is not the end of the world. I mean, I think people’s fear of blindness comes from ignorance and myth for the most part, because most sighted people don’t know someone who has, as I say successfully lost their vision And carried on with their lives. And the people that I met helped me to do that. And I think it’s very, very the most important thing you can know. You know, because the film is really about coping doesn’t have to be about losing your vision, it can be about losing anything, and how do you go on? And how do you get on with your life and keep your personhood?
[Beth Deering]
Absolutely, thank you. So that, you know, you bring up some misconceptions about people who are blind or visually impaired, or who have vision loss. I’d like to ask the group and maybe let’s start with Lynn. So what are some of the common misconceptions that come up?
[Lynn Heitz]
Um, so some of the common misconceptions that come up are that, you know, with losing vision, you’re also losing hearing, so people tend to raise their voices when they’re standing in front of you talking to you. Um, you know, the misconception that you can’t go to work that, um, you know, you can’t travel. Um, you know, you can’t go places. Those are just those are just a few. So maybe like you can’t live independently either.
[Joseph Lovett]
You lose your personhood as well. Yeah. Yeah.
[Beth Deering]
Dr. Prasad, do you find that in in your field that there are some misconceptions among, you know, your colleagues or maybe even some students coming in?
[Ranjoo Prasad]
Um, yes, I think what a lot of people don’t realize is that vision loss is very wide. So people who have early loss may have extreme difficulty doing some of the simpler tests such as reading, because they can’t see the detail. And so for people who come in and they have relatively quote unquote good acuity, they’ll still have difficulty with those with those tasks. Then on the other spectrum of it is you have people who have profound loss who have been rehabilitated. And they’re surprised that wow, this person can cross the street by themselves. They’re surprised that their independence, right, so it goes, you know, it goes from both extremes. And I think it’s, you know, education is very important education and awareness, and advocacy.
[Joseph Lovett]
You know, after I had had that vision session with a low vision therapist, and finally understood how bad my my vision loss was, and I had no idea before that, and because my brain had been basically filling in what the what the expectation was, I went to see my therapist, a psychotherapist and I was – I cried uncontrollably for an hour. I was literally unable to speak and then when I walked out the door of her office, I burst out laughing because for the first time as I walked across her threshold, I didn’t I didn’t trip on her stoop on the threshold. And the reason I didn’t trip is because the low vision therapist had said, you have profound vision loss in your lower hemisphere. And she took my head and she shoved my face down toward my feet. And she said, Your, your brain doesn’t know where your feet really are. So you have to look down until you see your feet before you walk out the door before you walk off a curb before you walk down the stairs. And then your brain will click into where your feet really are, and you will be safe. And it made a huge difference and I thought if that one piece of advice in that first session could make such a difference, what else was there that could help me to get along better? I was once – I met another glaucoma patient at my doctors at a party my doctor was having. And I told her about low vision therapy, my experience with it and she said, Oh, you don’t – quite angerly. She said, you don’t understand. She said, I’m a painter. She said, I cannot paint. And I said, Well, I don’t know your situation, but it would behoove you to just go see someone because it might help you. And I called her later that week and bugged her and I called her the next week and bugged her. And then finally she promised me that she would at least make an appointment. But a month later, she called me, and she said, I don’t know how to thank you. She said I’m back in my studio painting. I didn’t know this was possible. And I think it’s really important for people to take advantage of all the wonderfully skilled professionals that are out there that can help and just have to make people aware, which is what we’re trying to do in our outreach.
[Beth Deering]
So I, I’d love to talk a little bit about some of the services that are available, just you know, for people that are in attendance today that aren’t aware of what is so impactful. Lynn, why don’t you talk to us a little bit about if you don’t mind some of your experiences and perhaps a little bit about vocational rehab.
[Lynn Heitz]
Sure.
[Beth Deering]
or vision rehab, both either or, both, either or
[Lynn Heitz]
both, either or, and I’m so I personally found a lot of connections when I watched the movie about my life story and moving through experiencing vision loss. And I realized that there were some things that had I done them differently I could have maybe done better and could maybe be better at certain things at this point in my life. And for example, as I was going through the vocational rehabilitation process, part of that was travel training with a white cane. Well, you know, the O&M instructor dutifully came to my home and we went, and we did an O&M. And he gave me this cane that folded up and I dutifully carried it with me every day, folded up in my bag.
[Joseph Lovett]
Mm hmm.
[Lynn Heitz]
Had I at that point in my life, been given a straight cane to us. I couldn’t have folded it up and put it in my bag, you know, I would have had to use it. And I would have also had the opportunity to connect, which I didn’t do till later in life about – with the National Federation of the Blind and get to meet so many competent, blind individuals who were working in so many professions which, at the time, I didn’t think I was going to be able to do anything ever again. I was. I was a young mother, my children, were all under the age of 10. Um, you know, like, I had no clue as to what was going to happen next. Um, it wasn’t until much later after having a guide dog that I actually started to become comfortable with who I was as a blind person and started reaching out and learned how to use straight cane. Which, interestingly enough, I was taught to use by somebody who used a straight cane, not somebody who was certified to teach it. And, you know, I carry it with me every day.
The progression through vocational rehab, and, you know, vision rehab therapy. I was, I was given a lot of devices. I had glasses with a telescope on them. I took them home and put them in my drawer, because I didn’t want to use those outside. I didn’t want to be at the time identified as a blind person. And it took a lot of time for me to get over it. It took the conversation of being with other blind people who were successful and being able to save you know, you can do this, this is how you do this, um, you know, and learning from them. The rehab process is not always the best, it’s not always the easiest, but it’s definitely, you know, out there for people, it’s funded by the federal government. And, you know, when, when customers would call in and they’d say to my clerk, one of the questions on the on the application was, you know, can, you know, do you want to go to work and they’d say, um, you know, I can’t go to work, I’m blind. And they say, hold on, and they would transfer the call to me. And so, you know, so we would have the conversation and say, Well, you know, you are talking to a blind person who does have a master’s degree from an Ivy League University. And if I can do it, you can do it too. And, you know, I think that’s really powerful. So whenever you are in touch with other individuals who are experiencing vision loss, and you’re successful, and you can share that with other individuals.
[Joseph Lovett]
That’s what happened to me. And I mean, I’m not totally blind at all, but I’m getting there. And having met people like you, Lynn has made it doable. I did lose all my vision after an operation just because of a bleed. And, you know, it wasn’t the greatest thing, but I was reassured that it would come back and I believed it. But, um, it’s I was – I reached out to the, what I learned from other people and making the film to get me through those weeks, and it was extraordinarily helpful.
[Beth Deering]
Something that the film really highlights is the importance of building that support network, having that support network and finding the resources that are available to you. You know, I wonder, what are those conversations like? And I’m curious to hear from both on the medical side and then also as the patient, what are those conversations like with your doctor when you’re initially looking for that support? Whoever wants to start can start that.
[Joseph Lovet]
I think I’d be curious to hear what how, how Ranjoo experiences that, you know, I think patients with ophthalmologist to a large degree have feel ignored and not that they’re that their navigational and social issues aren’t addressed at all, and which is a problem and so that that tends to happen in the world more in the world of optometry. But they – but medical patients often aren’t being referred. So I would love to hear what how you experience it, Ranjoo.
[Ranjoo Prasad]
So when the when my patients come to see me first, they have an idea of what they’re in for. So they understand that we’re there to help them become more functional. And one of the things that I do is I actually asked detailed questions, but one question for sure is I ask about how they’re coping with their vision loss. And I can usually tell based on body language based on demeanor, whether you know, whether a person’s kind of withdrawn and how they’re handling it. And I’m sometimes usually very blunt because I’ve had patients who who’ve come in to me and said that never talked about it before. You know, nobody’s ever asked us questions.
[Joseph Lovett]
And how do people get to you? How do they get referred by them?
[Ranjoo Prasad]
So I work in a large health system of a large health system, a large department of ophthalmology, it’s Scheie Eye Institute, and I get most of my referrals come in from within the institution. I get a lot of outside referrals. I get a lot of referrals from, from the state agency, Blindness and Vision Services. And also within the health system as well. So, so Yeah, yep. So I that’s one of the first one of the things that I addressed mostly and then we tried to figure out ways to help them deal with that part of it. So I like to, you know, since I’m not a professional psychotherapist, I usually first step is usually refer them out to their primary doctors to discuss possibly getting professional help and counseling. We have a wonderful support group. So I wanted to give a shout out to Sherri Dressner, who’s on this call, and Sherry and our coordinator, Marquis Vaughn as well who’s also involved in support group have done a fabulous job putting it together and we have about 90 registered members. So our support group is also a good outlet for them as well. And right now we’re holding it virtually. And just try to figure out the, the proper resources to get, you know, to get them to the places that will help them for sure. But I have to just share one experience where I just remember that there was someone who I, you know, started talking about coping and I can tell she was very agitated, very angry. And the next thing you know, she busted out crying because she says that she’s never talked about it before to a professional. On the flip side of it, later on down the line, she actually got very upset with me because I had, I basically not confronted her, but I approached that about her. I asked her about that, and she just didn’t want to deal with it. So at that point, I thought, oh, gosh, did I like overstep my boundaries? And I said, No, as a professional, you have to deal with it. I’ve had, you know, individuals who have had suicidal ideations, you have to be prepared for that. I mean, all Yeah, the entire gamut. So the most important thing is making sure that you have the resources at the tip of your fingers to send them to the proper places.
[Joseph Lovett]
I think I think Ranjoo is hitting on something very, very important because I think a lot of patients are seeing medical doctors who do not want to rock the emotional boat? They don’t want to rock your emotional boat, and they don’t want to rock theirs. They don’t have the option, or they don’t think they have the time. And as a result, a lot of the questions that you’re talking about, that are only natural and normal and important, are being avoided. And we have to get over that we have to help them to if they’re not comfortable to ask those questions, then to refer them to someone like you.
[Ranjoo Prasad]
Yeah. Absolutely.
[Joseph Lovett]
What do you think, Lynn?
[Lynn Heitz]
And well, the one thing I would like to add to that is that – I was diagnosed at a very young age was something that no one could identify. And when I was 31, my diagnosis was changed to be something that was genetic, um, that I would eventually totally lose my vision. I had three small children at home. And I thought to myself, Oh, isn’t this wonderful? This is what I pass on to my children. Gee, how does that make you feel as a parent? Um, you know, I walked out of the doctor’s office, I felt like I was in a fog. Fortunately, my church was actually on the way home. And I went in and I sat down in a Pew, and I just, I cried, I cried. Um, you know, it, it must have been, I felt like it was like an hour or better. And, you know, I went, then I went home, and my husband was getting ready to go to work. So I never really had time to say something to him about what happened. And the pastor came over. And so we sat and talked and I shared stuff with him and, you know, I just kind of sat there looking at my kids as they were playing and thought, Well, you know, I have two choices. I can spend the rest of my life sitting here on the couch, or I can do something. And that was how I got connected with the Bureau of Blindness and Visual Services. And my very first counselor and this is like, it’s so important for people experiencing vision loss to encounter really successful individuals. The first counselor I had was a gentleman who was totally blind. He came to my house in Philadelphia using public transportation. He sat down at my dining room table, took all my information using a slate and stylus. He was very kind and he I asked him about his vision loss, and he was like, he was very kind, and he answered all my questions. And to this day, I can see myself standing on the front stoop watching this man walked down the sidewalk, in front of on my street to the bus stop thinking I’m never going to be able to do that. I’m never going to be able to do that. And through some training that he signed me up for some computer training. That was my first connection with the National Federation of the Blind. And like, toward the end of each computer lesson, this gentleman would stop, and he would talk to me about the organization. And he would talk to me about the people that were involved. And in 2001, when the convention came to come to Philadelphia, it was my very first convention. And I just couldn’t believe there were so many blind people like around like, you know, people walking five abreast down the hall in the Marriott Hotel in Center City, Philadelphia. Um, you know, it was just absolutely amazing the following here, I was awarded an NFB national scholarship. I got to meet the president of the organization, Raymond Kurzweil, who was the inventor of the very first reading machine, and all kinds a whole gamut of blind individuals who had gone to college had different careers. Um, no, I think it’s all in who you get connected to. And, you know, and being positive. I mean, like, these people were positive. Yes, you can do this. And I guess one of the other things is, for a long time, following that experience, I had a fair amount of vision. And, you know, I’m not going to lie. Yes, I did use it. But had I been taught alternative tech techniques like not Visual techniques, the fear factor of losing vision could have been lessened. Because every time I lost a little more vision, it was, oh my god, I have to do something else different. Whereas in the very beginning if I learned alternative techniques, and um, you know, I would have already had those tools in my toolbox. Would I have needed a refresher? Well, maybe, okay, but I would have known that I could do it and I wouldn’t be afraid.
[Joseph Lovett]
Right. I had – when in that we there’s a scene in the movie in going blind, where Steve Baskis the fantastic young man who went straight from a rehab after having his eyes shot out in this several body wounds to Heinz blind rehabilitation center. In Chicago, and we are with his mobility with his dexterity instructor, Steve Janukowskis. And Steve revealed to me that he had an eye disease with which he could lose his vision immediately. And I said, Oh my gosh, Steve, what are you gonna do? And are you planning for that blah, blah, blah? But they said, Listen, Joe, there’s something you’ve really got to understand. He said, You cannot spend your life preparing for what might be, you know, and training for what might be – you’ve got to do your best with what is and when things change, you’ll deal with if things change, you’ll deal with that. But in the meantime, get on with what you’ve got, which is similar to what Jessica had said to me with at the very beginning, you learn to use what you have. But that two minute talk from him literally changed my life and it changed my life, not just addressing my visual losses, and in terms of everything that I face and so but sticking with the blindness whenever I lose, whenever I would lose vision before then I would like I would become feverish with disgust and despair and thinking, oh my god, what am I going to do? How am I going to deal with this? What else is next? You know and just catastrophizing it more and more. But after Steve, I’m I mean, Sam., After Sam Uh, I didn’t do that anymore I stopped and I said, Oh, well, that’s not great. But is it really affecting me? You know, am I really able to? Am I not able to do this, that or the other? And for the most part, the answer was no. And then when it got to the point where this is a bit of a problem, then the question was, okay, how do we work around this and that was that change in attitude with me It just opened up the world to me it was it was really amazing. So what, what can you do? How do you do it? What can’t you do? How do you get around it? But I’d also like to discuss just for a second, low vision therapy and some of the misconceptions that doctors might have, and individuals might have. A lot of people think that the help that you get in rehab is, is machines, and they’re very expensive, and they’re clunky. And then you’re, and you’re probably never going to use them anyway. What I have found, and everybody’s different in their losses are different in how they use their losses are different. Excuse me. But um, I found that the most important thing I learned was knowing where my losses were. And once I was aware of where my losses were, then I could function around that and I could scan more deliberately. And I could wait for my eyes to adjust better in different situations. It made a huge difference. Just being aware of what my field of vision was and what and where it didn’t work. And what I have found talking to more and more patients because I find myself counseling a lot about talking to a lot of patients who call because they’ve heard about us course, they’ve heard about the film. And very, very often especially with glaucoma patients, they’ve never seen their visual fields, their doctors take them, they don’t show that to them. And if they do show it to them, they don’t tell them what it means. And it’s a huge mistake on the medical part. People really should know what their loss is, how it affects them, how it affects their, their navigation, and then they can go to low vision to find out how to get around that
[Beth Deering]
You know, I think one of the – the missions of starting this your charity its Joe is talking about education and making sure that people are educated on the resources and support that are available and having conversations like that. And I think that the relationship that we have with Dr. Prasad at VisionLink is something that we hope can be mirrored in other medical professions. We really have a relationship where we understand, you know, from start to finish, we hope that we can help somebody that’s going through this journey and we can provide the resources where the medical part may end, and then the support can come in. So, you know, I do want to just take a brief moment to talk a little bit about some of the resources that are available through VisionLink and specifically now that we’re in this period where there may be a sense of increased isolation, some of the ways that people can still be connected and receive the support and services that they need. Lynne, do you want to talk a little bit about some of the services that we’re providing here and how people can be involved?
[Lynn Heitz]
Sure, absolutely. So we have really jumped off the cliff so to speak right into remote learning as the pandemic really went into full swing. We are remotely providing instruction on iPhones, on computers using jaws. We are we do have a couple of students that we are remotely teaching Braille to we have started doing videos of different home management and cooking techniques that will be posted on our website. Um, we also have some support groups that are available. We have a men’s group, we have a women’s group, keeping up with the times, which is also like a current events type group. We have a trivia group, which is a lot of fun. We have a storytelling group where people create their own stories, and then come the end of July we’re going to have a story slam. So they get to actually tell their stories to a larger audience. We have a book club that meets every week and these groups meet on a weekly basis.
We are continuing to take intakes. Usually what happens is I get the intake first or the information first and Contact the individuals and then forward them on to our social worker, Marsha Drenth who does a full intake and creates goals for the individuals kind of fleshes out, is this individual looking for something instruction wise or is this individual looking for more of that isolationism support, um, you know, which they would get from more of the groups. So, there is a form on our VisionLinkPHL.org website that an individual can fill out to refer somebody or self-refer and we will collect that information and be happy to, you know, get in touch with anybody.
[Joseph Lovett]
What are your fees? What does it cost to get services for your organization?
[Beth Deering]
So right now, our services, there is not a fee associated with it. We have funding through the state, through the Department of Human Services. We have funding as we move forward in this environment. We are looking at potential fee for service, potential contributions as people are able to contribute. That’s not something we have in place right now.
[Beth Deering]
We are fortunate in that we’re able to provide services to individuals in the Philadelphia area specifically. Something that I did want to just bring back up. I think something that you said, Joe, was really important about being aware kind of in the moment with where you are and taking it step by step and realizing that as things change, as things progress, it’s like a new – a new start almost and building off of the skills that you have in order to move forward, and I think that’s something that we’re really trying to do at VisionLink is meet every individual where they are.
[Beth Deering]
Dr. Prasad brought up from the beginning that there such a range of vision loss and we want to make sure that we’re providing support to anybody that comes in. No matter what the level of vision loss might be. So being able to have, you know, experts who understand different types of trainings, different philosophies of vision loss has been so essential to our programming. We’ve been able to develop something really unique that other facilities might not offer, where we can truly work with each person independently on where they are in that moment and help them progress onto the next step.
[Beth Deering]
And, you know, I’m happy to hear that that’s something that is so significant to you because we feel very strongly that that’s what sets us apart in terms of our services.
[Joseph Lovett]
Well, I have to tell you, I. I don’t mean to sound like a stupid Pollyanna, but it helps if you look at this, you know, it was sight loss is a journey. You know, it’s a spectrum. And everybody who lives to a certain age goes through some degree of it.
[Joseph Lovett]
But in our more extreme cases, you know, you have to look at it as an adventure. If you’re going to survive it, I think emotionally and you have to say, OK, you know, can I do this? It’s like it’s like an outward bound that you wouldn’t choose to join. But since you’re in it, you know, you have to figure out, OK, how am I going to do this? And you have to do it at your own rate.
[Joseph Lovett]
And you need to be willing to seek help. It’s really, really, really important, you know. You know, the first time we showed Going Blind just before we locked picture, showed it to Mount Sinai at Mount Sinai Medical School with a bunch of residents. And the fourth-year students and some attending. And at the end, one young woman raised her hand and she said, I cannot thank you enough. She said, I thought that my.
[Joseph Lovett]
My patients’ futures and their health and their well-being was all on my shoulders, and I never realized that there were so many other trained professionals that could help my patients in ways that I could not medically. And she said it’s an enormous relief to understand this. And I’ve heard that since then. Over and over and over again from residents in the programs that we’ve shown the film to talk with. It’s really important that they that they understand that they’re not the be all and end all this and that and that they haven’t failed if you continue to lose your vision.
[Joseph Lovett]
It’s not their failure. Sometimes, I mean, that’s just not where science is yet.
[Beth Deering]
Lynn, that’s so interesting because you said almost that exact sentiment before.
[Lynn Heitz]
And Joe, if I can piggyback on that, it’s very interesting because very recently I was talking with a young lady who has recently become connected with VisionLink, and she was trying to get an Eye Report from her physician. And the physician said, oh, well, you know, you don’t need to go there yet. You know, there’s still all these other surgeries.
[Lynn Heitz]
And I said, I understand that, but I want to get on with things. I want to do things if we can. We can continue working on the medical side. And, you know, believe me, I think that research and everything is invaluable.
[Lynn Heitz]
And we have come so far
[Joseph Lovett]
Far enough, not even close.
[Lynn Heitz]
Well, you know, I think in my lifetime, they’ve come really, really far. They do have further to go. But I think it’s very important what you said, that doctors have to understand that they are not responsible. These are things that happen to people. And, you know, sometimes I think we are looked upon by the medical profession as their failure.
[Joseph Lovett]
Absolutely. Yeah, absolutely.
[Lynn Heitz]
And it’s like, well, no, we’re not your failures. It’s just, you know, let’s be real. I mean, you’re taught that you can fix everything. But the reality is (inaudible)
[Joseph Lovett]
You know what they – What they – what often is the case unfortunately, I’ve heard it from different people is the doctor says, oh, you’re doing great. You’re doing great. You’re doing great. You’re doing fine. You’re going fine. You’re doing great. And then all of a sudden, I’m sorry is something I could do to. And as opposed to, you know, you are having gradual loss. You know, this is the time to get to see a low vision therapist.
[Joseph Lovett]
And we have gotten the American Academy of Ophthalmology to recommend that they show that they send people to low vision early in their sight loss career, because I when I speak to them – in their sight loss journey – when I speak to ophthalmologists in groups, I say, let me ask you, if you had somebody with myopia and their vision was 20/40, would you recommend glasses? And they say, well, of course. And I say, well, they can see better.
[Joseph Lovett]
And I said, but they can get around quite well with 20/40. Yeah, but why would you just try to get around if you could see at 20/20 vision? And I said, well, that’s interesting. Now let me ask you, if you had a patient with a twenty five percent visual field loss, would you send them to a low vision therapist? Well, no. And why couldn’t they see a lot better? Couldn’t they navigate a lot better if they start to get low vision therapy early in their sight loss journey?
[Joseph Lovett]
Bingo. And it makes a huge difference with that.
[Beth Deering]
I’d love to get Ranjoo’ s perspective, because she has been such a champion in terms of the relationship of our continuum of care, I’d love to hear your feedback, Ranjoo.
[Ranjoo Prasad]
You know, I understand both what Lynn and Joseph were saying, but I have to say, fortunately, being in the department that I’m not being a tertiary care center, an eye center that hosts residents and medical students and having been I have I’ve been there for 19 years. There was a low vision optometrist that was there prior to me. And she’s been there since the mid-80s. She actually started the program. Her name’s Dr.
[Ranjoo Prasad]
Janet Steinberg. So they are ophthalmologist, already got into the habit of sending their patients to us very early on. And it was it was great because there are some patients that we’ve seen whose vision stayed stable for such a long time, which is fantastic. What they were there, you know, they know they’re where they need anything.
[Ranjoo Prasad]
Sometimes is for – for a simple just to get eyeglasses. That’s fine. We can do that. And then we’ll discuss. And we would discuss, you know, in case things change. Hopefully it won’t. But if they do, this is what’s available. There’s a whole field out there. So, yes, we’ve been very fortunate that we’ve got the support from our ophthalmologists. And now people actually are more out in the community sending patients in too, you know, with relatively, you know, what I would consider a quote unquote, good.
[Ranjoo Prasad]
But they’re still having functional difficulties. And that’s like the key is how they’re functioning. One example that I can give, and this is very, very, very early on in my career, extremely early, was a woman who had she had normal tension, glaucoma, and she had 20/25 vision, which to anybody is very good. But as a result of normal touch and glaucoma, because of the damage that was done, she lost contrast, which is what you brought up in your film.
[Ranjoo Prasad]
And she couldn’t she couldn’t see her – She was an orthodontist -She couldn’t see the brackets. When she was working and the glare from the light source of the mental caused her such difficulty. And so if somebody would just look at it and say, wow, she’s got 20/25, she can function perfectly fine. But she couldn’t. Fortunately, she was sent over to us. And we were able to address that.
[Joseph Lovett]
What did you do?
[Ranjoo Prasad]
Actually, we prescribed to a loop – a telescope, a surgical loop, actually, which magnified it. And because that telescope was – it’s manufactured by a company that makes medical equipment as well, Designs for Vision, she was able to get it on her own, but at least we were able to introduce her to it.
[Joseph Lovett]
And she was able to continue her practice?
[Ranjoo Prasad]
excuse me?
[Joseph Lovett]
Continue her practice?
[Ranjoo Prasad]
She was. She was – I don’t unfortunately I didn’t see her that often that many times after. But I think she was at least until she would get just something as simple as that. So acuity doesn’t mean you don’t always translate to function.
[Joseph Lovett]
No. And that’s what people don’t understand, at least about glaucoma there are so many other issues.
[Beth Deering]
Well, as we get towards the end of our hour, you know, I’d really like to ask each of you to just give a little advice to someone who may newly be experiencing blindness or vision loss. Anyone want to start, or should I put people on the spot?
[Joseph Lovett]
Well, Lynn’s the most experienced
[Beth Deering]
Lynn, you’re up!
[Lynn Heitz]
Oh, my gosh. You know, I think that the most important thing for a person who’s experiencing vision loss is to try and find an agency or an organization of blind individuals to connect with first. We are really, really honored at VisionLink, to have so many blind individuals who are working there and who are successful, who are very, very talented. And, you know, they are great role model, great role models for individuals.
[Lynn Heitz]
You know, that’s what that’s what someone needs to see. They need to see somebody with a positive attitude whose kind of been there, done that, got the T-shirt. You know, when I was 31, if someone had put somebody like that in front of me, then I could see that things could have been it could be a lot different for me than they are now. You know, I think I do OK. But I think I could do better.
[Lynn Heitz]
And. You know, so I think that’s really, really important.
[Joseph Lovett]
Yeah, I couldn’t agree more. I mean, I really couldn’t. And my situation is different. You know, I’m on the spectrum of vision loss. And, you know, unfortunately, people like me our issues are often not addressed in the in the blind community. And. And it’s and it’s a problem because we because we can get around and you know, and often quite well. People think it’s not an issue, but it is an issue and have to sort of figure out how. But I think what we’ve tried to do in our outreach – We have a charity called A Closer Look, and that’s what runs the outreach for Going Blind and our other films and what we try to do is to bring awareness of the different aspects of the vision loss and to rehab and accessibility and what you can what people can do and how they can get help. And it. When I first met Jessica. The date we’re about to start shooting, she said, you know, Joe, you really shouldn’t be doing this film with me.
[Joseph Lovett]
And I said, oh, really? I said, are you too smart, are you too pretty? Is your dog too telegenic? I mean, some of those the reasons we shouldn’t be using you in this film. And she laughed and you said you don’t understand. She said, I’m not the face of blind. I said, what are you talking about? This is this is over 10 years ago. She said, you met me. Fully employed. Walking my guide dog, training my guide dog on my way to work. She said that’s not the face of blindness. The face of blindness, who I was a few years before, is totally despondent, totally depressed, sitting in my room, terrified to go out.
[Joseph Lovett]
That the face of blind, she said. And that’s what you should be addressing. And I said, Well, I’m using you and we’re going to change the face of blind. And that’s what we’ve been trying to do.
[Beth Deering]
Powerful. Dr. Prasad, do you have any advice you’d like to share for someone who?
[Ranjoo Prasad]
Yeah, basically know that there’s going to be a surge of emotions that come with this and that’s normal, that’s natural that those are that’s the stages of grief. Second is that, as Joe and Lynn say, that, you know, you’re not alone. You know, there’s people out there who are experiencing something very similar, who’ve gone through it and who have been really well rehabilitated and are truly functional. And Lynn I always share your story with a lot of my patients, like how you’ve traveled to Harrisburg. I remember you telling me that I traveled so far, and I said, you know, it can be done.
[Ranjoo Prasad]
You can do it. You just have to get through. And then know that there is help out there. And also to speak up to your doctors when you’re having problems, having difficulties. Just let them know.
[Joseph Lovett]
Can I add something to that? Ranjoo, you brought up something very important when you said the stages of grief. And I think that this is not addressed enough. Sight loss is a somebody else said this to me, and I’ve repeated countless times that the process of sight loss is like being in mourning. And some people have said to me, I couldn’t bear losing my sight slowly, the way you have. It was so much easier for me losing it right away, which was sort of shock me. But it showed how awful they felt that the anxiety would be rather than getting used to your new situation. And there are so many stages of it.
[Joseph Lovett]
And it continues because you’re you’re constantly losing. You’re losing your ability to feel safe in a certain situation. Maybe your ability to read easily. Maybe your ability to read at all. Maybe your ability to drive at night. And then maybe your ability to drive at all. So it’s constant. Loss, loss, loss, loss, loss. And that requires some tough dealing with it. And it’s I don’t think it’s recognized enough and spoken about enough and invented enough because it’s it really gets in the way and you really have to accept it and accept the pain and deal with it.
[Ranjoo Prasad]
And also, Joe, you know, the studies have shown that, you know, with depression, anxiety, all the psycho-social impact that comes with that, you get poorer medical outcomes as well because individuals aren’t as compliant going to their eye doctors or they’re not compliant with medications and things like that. So it all go. It’s like this. It all goes hand in hand. Not only the rehab component, but also from the medical outcomes component.
[Ranjoo Prasad]
And then, you know, the depression can lead to lack of physical activity, which can lead to – worsening of diabetes. So it’s the root of a lot of a lot of things.
[Lynn Heitz]
And so if I can just piggyback on what Dr. Prasad and Joe have said, you know, to some degree, that’s why learning early on about non visual techniques is so important, because, you know, as as I lost vision and, you know, it was really difficult, had I learned non visual techniques early on, it would have still I would still have had that feeling of loss as I went through life, but it wouldn’t have been quite as traumatic as it was.
[Lynn Heitz]
So, you know, I think that there’s I think there’s a lot to be said for that. And, you know, being surrounded by individuals that you can you can really talk to and be blunt with.
[Joseph Lovett]
Well, I think it’s really important also to encourage people to look for help. Reach out for help. Understand that it is there, and you have to find the right person, as Lynn says, people who are inspirational when if somebody isn’t rocking your boat and you know, you have a mobility trainer that you don’t like, get somebody else. You know, I mean, if you need somebody who’s going to inspire you and show you how to do things and get on with your life, you’ve got to get on with your life.
[Beth Deering]
I certainly think that that is something your film has really proved. It was incredibly inspiring. The feedback so far from people has only been positive. So thank you again so much for sharing it with us.
[Joseph Lovett]
Oh, one more thing. I’m sorry that the film and Steve Basket’s just getting out of rehab and he’s in his new apartment and he’s feeling rather awkward in it, but he knows that he can do this, but he’s not in the best shape, it seems. But he’s giving himself good pep talks and everything. Well, we ended there because I wanted, I wanted to make it clear that everything’s not roses, you know. But by the time the film premiered, Steve couldn’t be at the premiere because he was climbing a mountain somewhere –
[Joseph Lovett]
He’s gone on to scale mountains. I think every continent in the world. And he’s become an inspirational speaker. Steve best. And it’s really incredible. Well, you know, when we talk about, you know, what you can do. I think it’s important to see these extreme cases. Absolutely.
[Beth Deering]
And, you know, I think I think we mentioned before we broadcasted the webinar. There’s an update on the participants in your movie. The people that you have these relationships with. Right? I believe we can we go to I’m Going Blind Movie. They would be able to read a little bit about it.
[Joseph Lovett]
And then we also have a short video that we did for the American Academy of Ophthalmology called There Is Something You Can Do, and you can refer your optometrist or ophthalmologist to it. And it’s about low vision therapy and how helpful it can be. And what to help it can be to both the physician and the patient, of course.
[Beth Deering]
Well, I really want to thank you all so much for being a part of this. I’d like to think Reader’s Digest Partners for Sight, they are who connected us with you and their foundation. They, I believe, funded your film and tremendous resource,
[Joseph Lovett]
Not just funded it but championed it and guided me to the best resources and the nuances of the site loss world where they were there amazing people.
[Beth Deering]
That’s great. It’s so important to have foundations like that. And we’re so grateful that they connected us. So thank you and thank you to everyone on the panel. This has been – we could probably keep going. If we weren’t on a time limit, we certainly hope to host another webinar like this in the future. As I mentioned, I will be sending an email with some links, but I’d really like to encourage everybody to visit the goingblindmovie.com to get any more information about the film to be able to share the film, stream it, rent it. I also encourage everyone to visit acloserlook.org to learn more about the outreach campaign and charity. For information on VisionLink services and resources, you can visit VisionLinkPHL.org. And we are so thrilled to have this partnership with Dr. Prasad and Scheie. We’re so thrilled that we were able to have this conversation about your beautiful film.
[Beth Deering]
Thank you so much, Lynn, for all your insight. And we’re really looking forward to moving forward. So thank you all so much.
[Joseph Lovett]
Thank you both. Thank you. Thank you then. Thank you, Ron.
[Beth Deering]
And thank you to Disability Pride, Philadelphia and to everybody that joined us today. Take care. Bye bye.